Throughout my pregnancy the doctors were telling me that Skylar was going to be born with Hydrocephalus. It was a very hard pregnancy. I hadn’t even met my daughter and they already knew that she would never walk or talk or meet many milestones at all. I was determined that she would be normal. I had met with a neurosurgeon during my pregnancy and we had a plan. After my pregnancy, she was going to be transported to Arkansas Children’s Hospital and have a shunt placed and once the fluid was removed she could live a relatively normal life. Well God had a different plan.
When she was born the nurse stuck her face over the curtain so I could see her and immediately took her the NICU. I’ve been hearing every negative thing you could possible think of for so long but for that 15 seconds she was perfect. The next day I got news that was very unexpected and has been documented as one of the worst days of my life. Skylar did not have hydrocephalus she had what was called Schizencephaly. She had a stroke in utero and parts of her brain did not develop so fluid built up and did not allow all of her brain to develop. So instead of putting in a shunt and allow Skylar to live a normal life Skylar would never live a normal life because she did not have a brain capacity to do so. I was thankful that she did not need a shunt because I was scared of the surgery and what could happen but due to all of the fluid Hydrocephalus could always be a possibility.
Over the past couple of years, fluid has continued to build but because it has not affected her in any way the doctors continued to watch it. However, in September of 2011 she was at her school. She had started Kindergarten and things were going well. I was still a nervous wreck having her in school but doing better but a little boy in her class pushed her over in her wheelchair and she hit her head on the ground. I think God every day that the aide was there to catch her because if she would not have been there to break her fall some she would not be here today. She suffered a concussion, brain bleed, and the fluid that she did have increased to the point that she required a shunt just a few days later. She’s had four shunt surgeries within 8 months and we are hoping that this last one will be it for a long time.
Skylar is an amazing little girl and she is the strongest person I know. Her laugh and smile is the sweetest sound I’ve ever heard and I’ve never cared about her limitations I’m just thankful that God picked me to be her mom. She lights up a room and she’s been through so much in her 6 years and I think she’s going to do great things!